Intersexuality and its Intersections with Disability: A Biopolitical Perspective By Arpita Das Submitted to Central European University Department of Gender Studies In partial fulfilment of the requirements for the Degree of Master of Arts in Gender Studies First Supervisor Second Supervisor Prof. Eszter Timar Prof. Grazyna Zygadlo CEU eTD Collection Budapest, Hungary 2011 Abstract Recent developments to include intersex people within discourses of disability are indicative of the porous nature of these boundaries between identities. I explore the intersections between intersex people and disability within the realm of biopolitics that works towards classifying and hierarchizing people around the ‘norm’. I argue that there is a collision between discourses of intersex people with discourses of disability which is reflected through the language of law and medicine. Because of this collision, both people with disabilities and intersex people are influenced in similar ways by processes of normalization and deemed ‘the abnormals’. As people who do not fit within the logic of normalization, they are therefore not treated with rights at par with other citizens and lack equal rights including the right to consent and the right to bodily integrity and are therefore vulnerable to extreme marginalization and discrimination within society including abuse. As partial or non-citizens, they are subject to corrective surgeries and other alterations to fit them to the idea of the normal. These corrective procedures are not restricted to people who are already born, but within the era of molecular biopolitics, where normalization procedures are directed at the level of genes and chromosomes, it also takes shape through processes of genetic engineering. Through my thesis, I aim to question these normalization procedures and their impact on intersex people and people with disabilities. CEU eTD Collection i Acknowledgements Time for acknowledgements! First and foremost, I would like to thank my first supervisor Dr. Eszter Timar, for her endless patience and support for my vision and work. I am extremely grateful to her for going through several drafts of my work and giving extensive feedback. I would also like to thank Dr. Grazyna Zygadlo, my second supervisor, for her constant encouragement during my study at the University of Lodz, and for her feedback on the first draft of my thesis. This work would not have been possible without the support of Dr. Linda Fisher and Dr. Judit Sandor who helped inform my initial ideas and thoughts. I am also thankful to Dr. Hadley Renkin and Dr. Anna Loutfi who provided valuable comments and feedback during the thesis writing workshops and the presentation of my study proposal. I would also like to thank Dr. Lena Eckert and Dr. Katherin Thiele for looking at my work and offering feedback during the NOISE Summer School in The Netherlands. I am grateful to everyone at the Department of Gender Studies, Central European University for their help and support in several different ways and for making my time in Hungary academically fulfilling. I would like to thank my friends, especially Manoela, Svitlana, and Tiina for their help and emotional support. I thank my family for being a constant support in my life and believing in me always. Last, but not the least, my greatest gratitude to Alankaar – you mean the world to me. CEU eTD Collection ii Table of Contents Abstract ............................................................................................................................................. i Acknowledgements........................................................................................................................... ii Table of Contents ............................................................................................................................. iii Introduction ...................................................................................................................................... 1 Chapter 1: The ‘Abnormals’ within Biopolitics.................................................................................... 7 Chapter 2: Intersex people within biopolitics................................................................................... 18 2.1 Positioning intersex people within the sex/gender paradigm ................................................. 18 2.2 Intersex people: The politics of naming.................................................................................. 20 2.2 The decision making process.................................................................................................. 23 2.3 Intersections within discourses of transgender people and intersex people ........................... 26 2.4 Intersex people within the biopolitical framework ................................................................. 27 Chapter 3: Disability ........................................................................................................................ 30 3.1 Disability – A brief Overview .................................................................................................. 30 3.2 Monsters and Freaks.............................................................................................................. 33 3.3 Disability and Biopolitical framework..................................................................................... 36 Chapter 4: Discourses of Law and Medicine..................................................................................... 42 4.1 Discourses of law ................................................................................................................... 45 4.2 Discourses of medicine .......................................................................................................... 50 4.3 Discourses on intersexuality by organizations working on intersex issues............................... 52 Chapter 5: Intersex people and people with disabilities: points of intersections within the biopolitical framework ...................................................................................................................................... 56 5.1 Discourses of abnormality...................................................................................................... 57 5.2 The Exceptions....................................................................................................................... 60 5.3 Consent and Bodily integrity .................................................................................................. 65 5.4 Genetic Engineering and Eugenics.......................................................................................... 70 CEU eTD Collection Conclusion....................................................................................................................................... 76 References ...................................................................................................................................... 80 iii Introduction Intersexuality and disability although quite different from each other share certain similarities. Both these groups - intersex people and people with physical disabilities are subjected to processes of medicalization, medical classifications, as well as being subjected to silence and shame (Colligan, 2004); a number of studies would contend that these processes of medicalization often lead to their categorizations as ‘intersex’ or ‘disabled’ in the first place. Both people with physical disabilities and intersex people do not fit in the standards that society sets for the ‘normative’ body. As such, they are both considered anomalies of nature. For example, intersex people are considered neither male nor female1 and have often had to undergo multiple surgeries many a times without their consent to conform to being ‘proper’ males or females. People with physical disabilities2 also make tangible their differences in terms of body size, shape, and ability. Both intersexuality and disability are medicalized as ‘conditions’ in need of treatment and cure and therefore to be ‘fixed’. In addition, there are also a number of assumptions with regard to sexuality for both these groups. People with disabilities often face being labelled as either asexual or being ‘hypersexual’ (TARSHI, 2010). Intersex people in turn are also subjected to negative images and stereotypes about their sexuality (Colligan, 2004). Both these groups “titillate the projected, often repressed fantasies of outsiders” (Colligan, 2004, p.45). In her study, Kafer (2004) highlights the presence of people as well as communities who worship amputees and CEU eTD Collection have fantasies about them. The study marks how people in these groups actively stalk and 1 I have used the terms male and female and not men and women very consciously throughout the thesis as I intended to bring attention to their sex and not their gender. I have used the terms men and women wherever I wanted to have a discussion about their gender. 2 Politically, I align myself with the term people/persons with disability and not ‘disabled people’ as the latter accords more importance to the disability rather than the people themselves. 1 desire close contact and even sexual relationships with amputees specifically because of their disability. Many intersex people may not have any other problems except that their external or internal genitalia, chromosomal level and/or hormonal levels may not be perfectly aligned to suggest being strictly